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Kids Living With Spina Bifida Face Major Challenges

Evening Edition

Above: Spina bifida is a birth defect that occurs when the backbone and the spinal canal fail to close. It happens most often in the first few months of pregnancy. Children born with spina bifida can have severe paralysis and a lifetime of other health problems. KPBS Health Reporter Kenny Goldberg tells us the condition tends to affect Hispanic children more than others.

Aired 1/15/13 on KPBS News.

Babies born with spina bifida, one of the most common birth defects, can face a lifetime of medical issues.

— Two-year-old Nandito Gallego loves to strut around his La Jolla apartment and play with his toys.

He’s a budding Elton John. And Payton Manning, look out.

Nandito’s mom, Marcia, said she didn’t expect her son would get this far.

“I still see him walking, and sometimes I feel that I’m dreaming," she said.

When Marcia Gallego was 15 weeks pregnant, an ultrasound revealed Nandito had an opening in his spine. Marcia was told that kids with this condition, called spina bifida, often end up severely disabled.

Spina bifida is a birth defect that occurs when the backbone and the spinal canal fail to close. It happens most often in the first few months of pregnancy.

Children born with spina bifida can have severe paralysis and a lifetime of other health problems.

The condition tends to affect Hispanic children more than others.

Marcia holds up a snapshot of Nandito. It shows him in a basinet looking at a photo of his smiling parents.

“That picture, he was probably eight days old," Gallego said with a sigh. "He was recovering from his third surgery. And sometimes we couldn’t be with him because of hospital rules. So we placed that picture to show him how happy we were that he was here, and just to remind him that we were happy for him.”

As with many children with spina bifida, Nandito was born with fluid on the brain. Surgeons had to implant a shunt to drain the fluid.

He was in the neonatal intensive care unit for the first 63 days of his life. The hospital bill was $980,000.

Nandito has had a total of nine operations, including two brain surgeries last year to fix his shunt. He’ll celebrate his third birthday soon.

His father, Fernando Gallego, said it's been quite an experience.

“The prognosis was that he would be able to walk with crutches and surgeries, after he was like six or seven years old, with a lot of work," Gallego said. "And I don’t want to say that it’s been easy, but it hasn’t been as traumatic as expected, for the walking part, at least.”

Spina bifida is one of the most common birth defects. That’s not to say it happens frequently. In California, it affects about one in every 2,800 pregnancies.

Most kids with spina bifida in San Diego are treated at a clinic for spinal defects at Rady Children’s Hospital. The clinic includes specialists in a number of disciplines, including orthopedics, urology and neurosurgery.

The clinic’s Dr. George Chiang, a pediatric urologist, said kids with spina bifida usually require a number of different specialists.

“Well, if you imagine, they’re essentially kids who are born with their spinal cord open. And as a result of that, the nerves going to a lot of different things can be pretty much altered, or completely severed," Chiang explained. "So, not only do you have problems where kids are permanently in a wheelchair, and not able to move, you also have kids where nerves to their bowels and their bladder are completely gone.”

Chiang said without surgical interventions, many kids with spina bifida would have to live in a wheelchair and wear diapers for their entire life.

“We do our best to assist with their mobility issues, and we do our best to try and deal with all their diaper issues," he said. "We try and prevent them from being in diapers through various surgical means and medical means.”

The exact cause of spina bifida is unknown. But research reveals women who lack folic acid in their diet are at higher risk of having a baby with the condition.

The Centers for Disease Control says because of their diet, Hispanic women consume the least amount of folic acid of any ethnic group in America. Hispanic women are also less likely to take a multivitamin with folic acid when they’re pregnant.

That may explain why there’s a higher incidence of spina bifida among Hispanics.

In San Diego, the Spina Bifida Association is trying to change that. Twice a year, the association holds events where it invites affected families and others interested in learning about spina bifida.

Erica Jorquera, the association's secretary, said outreach is key.

“We talk to the families to teach them how important it is to eat or include in their diet the folic acid, even through the cereals now have more folic acid than before," Joquera pointed out. "Also, to encourage them to eat more vegetables, like broccoli and spinach, all those greens that are pretty good in folic acid.”

But even women who eat right, take supplements and have no family history of the disease can have a baby born with spina bifida.

That’s what happened to Marcia Gallego.

Nonetheless, the Gallegos have worked hard to help Nandito forge ahead. They concede there will likely be many challenges in the future. But so far, so good.

Marcia Gallego said when she was pregnant, people used to ask if she wanted a boy or a girl.

“We used to answer, we just want a happy baby. And right now, I think it’s like our dream come true that we have a happy and a healthy baby after all,” she added.

With advancements in treatments over the last few decades, the outcome of babies born with spina bifida has steadily improved. Today, there are an unprecedented number of adults living with the condition.

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